The "L" word

[GemmaRowlands]

It's all too easy for people who don't understand to comment. And it can be difficult, because you LOOK physically fine, but you just know how you feel, and you know for a fact that you wouldn't be able to cope with the things that they're saying you should be able to cope with. Also, there is so little knowledge and understanding about the condition that people simply do not understand what they're talking about, and as a result of this they may often say things that are just simply insensitive. If you hear any comments, you should point them in the way of a website link that can explain things to them a little bit better.

 

[quarterbreed]

Oh yeah. I was a mover and shaker. Work hard, play hard. Fortunately my friends and family understand. It still hurts, though, when someone who doesn't care to know makes hurtful comments.

 

[cyberpuppet]

It's all too easy for people who don't understand to comment. And it can be difficult, because you LOOK physically fine, but you just know how you feel, and you know for a fact that you wouldn't be able to cope with the things that they're saying you should be able to cope with. Also, there is so little knowledge and understanding about the condition that people simply do not understand what they're talking about, and as a result of this they may often say things that are just simply insensitive. If you hear any comments, you should point them in the way of a website link that can explain things to them a little bit better.

When I am on a normal day or less bad day I cannot understand how awful I feel on the bad days. I cannot get why I could not get out of bed, or do the washing up or whatever and I the one suffering this triple bleeped condition.

If I cannot understand how bad I can feel I have some forgiveness for those who have no experience who dont get it.

 

[quarterbreed]

When I am at my best I am living life at extended holiday pace - frequently stopping to watch the world go by. What I do achieve takes more proportionately than it would a normal fit person. So I get called lazy - and it hurts.

 

[cyberpuppet]

When I am at my best I am living life at extended holiday pace - frequently stopping to watch the world go by. What I do achieve takes more proportionately than it would a normal fit person. So I get called lazy - and it hurts.

I know exactly what you mean by extended holiday pace - it describes fibro life perfectly.

People look at me (us) and comment about how they would love to be able to "sleep in" when they felt like it, or stop and watch the world go by and how wonderful it must be to live like a perpetual holiday. I try and tell them that if they had to sleep in because they were too exhausted to do otherwise, they had to stop and watch the world go by because the pain is crippling them, had to live like a perpetual holiday they would soon grow to hate it.

A holiday is a change, a break, doing something different. If you are doing things slow the whole time its not a holiday its a straight jacket. I dont want to be slow, watching the world go by I want to be in the fast lane living life to the full not watching it go by.

 

[painismylife]

Yes, I have been called the "L" word. And yes, this is the thing I hate the most. I have accepted that I no longer have a mind like a steel trap because of the "fog." But when I just can't do- fill in the blank- I can't stand when this word comes up.

 

[JoshPosh]

That's the main concern with people with this problem. We all have family and friends that do not understand the condition, and instead of sympathizing the become part of the problem. Awareness seems to be the culprit here. People don't understand and the are too LAZY, to really give a damn.

 

[Hedonologist]

Fortunately I don't get many of these comment. I suppose that's because my CFS is manageable and I work from home mostly. So there is no one to claim that I am scrounging welfare or anything.